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During another long night of stomach pain, I wrote what I thought was a beautiful article about dignity. By morning, I realised I had written around the experience rather than about it.
I had researched the scientific literature, studied Professor Chochinov’s Dignity Model, explored different definitions, and even produced a pretty impressive infographic.
Amid the pain and the fear of what lies ahead, I was quite pleased with myself. At least the infographic was looking good.
It was a familiar pattern. After a bad PSP experience, especially a deeply personal one, I sometimes let my writing escape into research. It gives me something to understand and organise when the experience itself feels beyond my control. That can be useful, but it also puts distance between what I am living and what I am willing to say.
I will spare you the intimate details. But the night was torture. These stomach episodes now come almost every other day or night. Beyond the pain is the fear that, even when one episode passes, another will come, or a different symptom will take its place. Living with a progressive disease means knowing things can get worse without knowing when or how.
None of the dignity article was untrue. But publishing it on its own would have left out the hardest part: the night that sent me looking for the research in the first place.
This morning, I feel a little better. Still fragile, but better. I managed a little rest.
I am not giving up on positivity. I am simply refusing to let it become a disguise. I can be grateful for a better morning without making the night sound less awful than it was.
My priorities have not changed: faith, family first, dignity, positivity, and purpose. They still guide how I want to live. Writing honestly about a terrible night does not mean I have abandoned them.
Perhaps that is the part about dignity I needed to write first. I can keep some things private without hiding how hard they are.
So this is the truth, without every detail. Enough to be honest with you, and with myself.
I may still publish the dignity article. But I think it will mean more now that this one comes first.
For now, I am aiming for a better rest of the day.
The pain may well be back.
So will I.
